B12 injections: Hi guys I first posted... - Pernicious Anaemi...

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B12 injections

FionaD
FionaD

Hi guys

I first posted on here at the end of March - many thanks to Sleepybunny for your help at that time! - I tried a couple of injections because of constant nausea and vomiting for a period of 6 months and the symptoms improved for a little while and then came back.

I had a private pernicious anaemia panel done before any further injections. I couldn’t wait to get home after the blood was drawn to inject again...

I have since 4 April been injecting daily and, oh my gosh, the improvements are HUGE!!!

My low body temperature and low blood pressure ( all my life) have normalised. No more low-grade fevers, I haven’t vomited, the nausea and acid reflux have pretty well gone, I can feel my legs, hands and feet again, the burning has gone, the tinnitus has all but gone, I sometimes have energy and my digestion is back online!!!! The dental problems which I was finally told was TMJ has pretty well gone, too. Life is all round MUCH better!! 😄

My query is that my blood tests showed nothing that indicated PA. I knew that the two injections would skew the results and I know that the Intrinsic Factor antibodies test is only between 40 and 60% accurate (the result was negative) and for some reason they couldn’t give me a result for the Parietal Cell antibodies test. However, my B12 was very high at over 1200, active B12, MMA and homocysteine were all good. However, I had some strange other results.

I had been taking high doses of vitamin C as I knew the jaw/tooth pain (and painful tongue) came together with the nausea, vomiting and fevers. I had a similar episode lasting a couple of years about 5 years ago and had 2 teeth extracted due to ‘abscesses’.

My serum iron was high, as was RBC and RDW. Neutrophils and UIBC were low. My transferrin saturation rate was over 60% and it was suggested I be tested for Haemochromatosis.

I stopped the vitamin C supplementation in February.

I have since had another blood test with my GP (who told me that I obviously didn’t have PA, in spite of my huge health improvements and family history) and my electrolytes are fine but my ferritin was only 15 (range starts at 15) so Haemochromatosis seems unlikely - can vitamin C raise your transferrin saturation rate like that?

I don’t know whether to continue with any investigations, such as for liver function (my right flank constantly feels ‘overstuffed’ and I still can’t digest fat), or carry on with the B12 until I stop improving? (It’s not all perfect and I get some odd symptoms some days such as severe pins and needles and electric shocks etc, which I understand is normal when you first start to SI).

Can any of the veterans here offer any advice, please?

4 Replies
clivealive
clivealiveForum Support

Hi FionaD was your Folate level ever checked?

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed.

FionaD
FionaD in reply to clivealive

Thank you, Clivealive

No, folate has not been tested. My GP is not open to suggestions. I did manage to get potassium tested and that is okay. My GFR shows ‘mild impairment’ at 88 (>60 : mild impairment range 60 - 90. (Any ideas on this?)

My original private blood test results took 6 weeks to come back and I have been supplementing with iron and folic acid from when I started daily injections.

Serum iron has dropped from 32.3 to 14.9 and saturation from 63 to 31%. This seems a big change in a matter of weeks?

I have not been helped by doctors in the last 15 years. I am very grateful to the help and information from sites such as this!

Curlygal
Curlygal in reply to FionaD

I'm no expert but I know vitamin C greatly improves your iron absorption.

FionaD
FionaD in reply to Curlygal

Thank you, Curlygal. Yes, it does. It just seems a very big difference in a short space of time.

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